A Second Opinion

Sometimes, you decide to get a second opinion. And sometimes that second opinion results in a drastic change to your treatment plan. Truth is, I had always planned to get a second opinion, but once I started chemo, it just seemed like such hard work. My executive brain functioning is at an all time low and I’ve been using all of my reserves to work and keep my children happy and alive. The idea of reaching out to an alternate medical center and getting them up to date with where I am at in my treatment seemed mind-blowing. But once I confirmed that I had Metastatic Disease, it seemed like the logical thing to do. I mean, in theory I’ll be dealing with this for life, so what’s a little effort toward a different point of view.

Second Opinion

I called both Memorial Sloan-Kettering and Dana Farber Cancer Institute. Dana Farber made it so easy I couldn’t not go there. A patient navigator, Brittany scheduled my appointment and arranged for my records to be sent. I spoke with my doctor’s here and they faxed over everything else that was needed. All I had to do was pick up disks of all of my imaging (CT scans, mammogram, bone scan, etc.) and drive down. I spoke with Brittany last Thursday and she scheduled me for the following Tuesday.

Dana Farber Cancer Institute is like the Gold Standard of cancer care. The interior does not look like any hospital I’ve ever been in. Dare I say, it’s cozy. That’s right. Also everyone treats you like a VIP. “Of course, you’re Maggie Van Duyn, right this way!” So immediately I was impressed with them. My appointment was at 8:30 and I was seen at 8:30.

Dr. Christina Herold (who looked so much like Amy Sedaris my sister could barely take her seriously) entered the room and introduced herself. She was warm and kind and lovely…..And then, do you know what she said??? She said, “Maggie, I’ve looked over all of your paperwork, but I really want to hear your story. Tell me how you discovered this and hSide by sideow you find yourself here.” The social worker in me, greeted the social worker in her and I told her my story. She did not rush me. She answered all of my and my family’s questions. She spent over an hour with us. And she hugged us in the end.

Here’s what she said. Metastatic Disease is incurable, so we need to treat the disease differently than if we were trying to “cure cancer”. It’s a chronic illness that needs to be managed. I can spend many years in CR (complete remission), but the way we go about that is often different than if we were trying to eliminate the disease. The sub-type of cancer I have is ER/PR + and Her2-negative so there are a lot of tools that the medical field has to manage the disease.

What the ER+ means is that my cancer is fed by estrogen. And so, the primary goal is to eliminate the source of food for the cancer. 90% of the estrogen produced in our bodies is produced by the ovaries. There are 2 ways to stop the production of estrogen in our bodies. One is a drug called Lupron. Lupron is administered by injection, once a month. Sometimes the estrogen “breaks through” at the end of the cycle. Another way is to remove the ovaries-what’s called an Oophorectomy (which I can only say with an accent like Rosa from Orange is the New Black). That is what Dr. Herold recommends. An oophorectomy.

Apparently, oophorectomies are no big deal. You go in for the day, get a little laparoscopic surgery and then head on home at the end of the work day-returning to your regularly scheduled activities within a week. Science is cool.

Then she recommends that I go on two medications-Letrozole and IBRANCE®. I will take those for as long as they work (5-10 years maybe). If the cancer “breaks through” that we figure something else out.

She does not recommend a bilateral mastectomy and, in fact said Dana Farber doesn’t really do them for people with Metastatic Disease. And they definitely would not do Radiation. Mastectomies and Radiation are used when one is trying to “cure” a disease and that’s not the reality for me.

Now, I’m all on board for dropping radiation off of the treatment plan, but it feels a little counterintuitive to me to leave the cancer in there when you could take it out. The Breast Guru reports that there is some data showing that removing the primary tumor (left breast) can be helpful. Dr. Herold believes that the elimination of estrogen and the combination of the medications is the “single most effective treatment” there is for shrinking the tumors and achieving “progression free survival”.

I have yet to discuss with my doctors here in the 802 to see what they think. The ultimate goal is to keep me alive long enough to find a cure for the disease. So rest assured I’ll be considering my options and raking the internet and trying to figure out the best solution there is to live a nice, long life.

10 thoughts on “A Second Opinion

  1. I wonder if you were to get a third opinion if you would different advise yet again? Makes it a bit confusing I would think. So happy to hear you had a good experience with Dana Farber. So curious what the VT docs will think of their advice!

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  2. Hugs. The new normal that comes with understanding a cure is not an option is a big one. If you need an extra set of ears from a family who has needed to accept that type of reality, we are here.

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  3. How fortunate to have so many smart people looking out for the best results. And I love that you are taking personal responsibility to investigate so you can make an informed decision. How did you get to be so amazing!?

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  4. Big decisions, Mags. I know you will make the right call for you. Know I am only a phone call away. Love, hugs, strength, prayers to my strong, smart, brave niece. Love you, babe!

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  5. Maggie, I have been reading your posts and following your story for the past several months. I hold each word close, valuing the spirit and the voice behind it. Although I do not know you well, I love people who love you, and that is powerful stuff.

    Having gone through a difficult situation with my husband’s health in the past year I feel connected to your journey and the wish to describe your experience precisely and honestly. I am deeply touched by your candor and strength and willingness to share your vulnerability as well (yes, you have complete and valid permission to be human). I have been with you through the visualizations, the practice of deep gratitude and moments when key priorities were displayed in stark relief. I have been with you through the glasses of wine, the moments of doubt and deep humanity.

    And through it all I have been in awe of your commitment to positivity, to your family, to hope and life and just living this beautiful, precious life fully and completely. In doing so you inspire us to do the same.

    Just know you have one more ally who is holding you up from afar. One more friend. One more person who willing to collect dust from Mars if called to do so.

    With so much love and belief in who you are,
    Erin

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  6. Maggie, thank you so much for sharing your journey. I’m so glad that you are getting different t opinions and then can come back to your team to determine the best plan. To know that you may not need to go through some unnecessary difficult procedures is a good thing. Know that I think about you every day and admire you so much with your openness and positivity. You are an inspiration.

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  7. Maggie, I’ve been following your blog and your journey. I am so grateful to you for all that you share and so inspired by your approach to all of this. I’m sorry you’re going through this. I think about you a lot. I have been writing about my own health experience lately, and you’re smart enough to know that I would never compare my journey (chronic Lyme) with yours- however, I do understand a bit what it means to live with ‘a new normal.’ To have many doctors tell you different things, and the advice, my god! (Stop eating sugar, stop eating meat! Eat more meat! take all the supplements you can- ditch supplements you’re body can’t take all that! obviously peppermint essential oil will cure you if you would sign up with my pyramid.) My favorite is when my people say I’d recover if only I ‘would develop a spiritual practice.’

    You also said something the other day about waking up in The Benzo Fog. I understand that to a T! Since my diagnosis it’s taken a cocktail of meds to get me to sleep at night, and in the morning I’m no better than a mummy. (Like in a museam, not a british mother.)

    Anyway, having grown up with Kendra, Angie and Sammie, there are just no one else on earth like the Turner/Boymer clan, y’all have more spirit, fire, humor, strength, grit, toughness, endurance, as well as love and support for one another, than anyone else I know.

    Keep writing when you feel up to it because SO many people are reading.

    Much love,

    Melina Coogan

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